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STORIES – Commentary – Health Care Is a Human Right

Health Care Is a Human Right

By Julie Brisson

I have gotten an education in health insurance since October, 2015 when I had a health crisis. I went from platinum Blue Cross Blue Shield to Vermont Health Connect Silver Blue Cross Blue Shield to Medicaid to Medicare with no Part B coverage.

I am fortunate that I was awarded SSDI on my first try. Because I qualified for Medicaid, I couldn’t have the Vermont Health Connect coverage anymore which cost me $40 per month. Don’t get me wrong, Medicaid was great and covered exactly what I needed for the two years that I qualified. My SSDI certification is good for five years, but someone on Medicaid has to move to Medicare after two years, which I had no idea about until a tortuous two-hour meeting at the local Council on Aging. Medicare Part B costs $134 a month and unfortunately, my SSDI did not increase to offset this additional premium. To make a long, horrible story short, I only have Medicare Part A hospital coverage and I’m afraid about having the ability to continue my treatments for chronic health conditions.

Luckily my local hospital extends me 100 percent financial assistance to any provider and service affiliated with them, which is very helpful. However, there are services I have utilized at other hospitals and 100 percent assistance is not an option. I now understand why people utilize emergency rooms for nonemergency issues.

I use a CPAP to combat sleep apnea and without BCBS or Medicaid, I have to pay for supplies so I’m not replacing the components as often as I should, which could lead to problems. I have to pick and choose what things will force me to go see my primary care provider and which things I’ll try and take care of myself. I’ve worked my entire adult life until this health catastrophe. Keeping healthy so that I can live my best life shouldn’t be so difficult. I’m fortunate that I understand how to navigate the system and what help is out there to make sense of the endless red tape.

However, not everyone can successfully navigate the red tape and the system. It’s infuriating that in 2018, health care is still viewed as a privilege and you are stigmatized for using Medicaid. I was ashamed when the receptionist would say “you have Vermont Medicaid, right?” and I would sheepishly answer yes. You never know when your life will change and you go from Platinum private insurance to Medicaid or Medicare. Health care is not a privilege; it’s a human right.

 

Travelers’ Tales

This is from the Autumn 2018 issue of The Independent.

By Deborah Lisi-Baker

Celebrations of the 28th anniversary of America’s major disability rights law happened shortly after Independence Day amid a spring and summer of national and local threats to civil rights. In addition to attacks on the ADA in Washington, racist threats happened closer to home. First, a local story exposed racism at a camp near where I live, followed by media coverage of racist attacks on a respected Bennington legislator, Rep. Kiah Morris. These stories brought back other memories of black people treated as unwelcome strangers here in Vermont. After speaking at a University of Vermont class, I met one student who said she had never been more terrified than as she traveled down Church Street in Burlington in a wheelchair — a black woman surrounded by whites looking down at her.

I grew up in small towns in Vermont and New Hampshire. I only knew one Japanese-American family — the father a scientist and a survivor of the Japanese-American internment camps of World War II — and one black family who moved to town later. In high school, two black students joined our bus ride on farm roads as we moved toward town. I remember seeing them seated across the aisle and a few rows in front of me. As a white girl with a visible disability, I knew what it was like to be the stranger; I was keenly aware of how carefully they were looking only forward and not making eye contact with others.

I grew up surrounded by news coverage of the civil rights movement, the war in Vietnam, and the murders of Martin Luther King and Jack and Bobby Kennedy. Images of protest came across the television screen surrounded by commercials for cars, laundry soaps and cigarettes. Without realizing it at first, I began to see how much the disability rights movement owes to the courage of blacks and other people of color who challenged discrimination in the streets, in courtrooms and in Congress; who took the fight to the streets of Selma and Montgomery and Boston and to the National Mall in Washington, D.C. Without their successful legislative and legal challenges to requirements that they sit at the back of buses and trains, the requirement that they accept segregated schools and movie theaters and the expectation that they should be turned away from hospitals, restrooms and restaurants, people with disabilities would have found it much more difficult to pass disability rights laws — laws which owe so much to earlier civil rights protections black Americans fought for and achieved.

Over the years it has been the stories of so many Americans owning their own race, class, gender and sexuality and speaking up for who they were who helped me realize that my differences, like theirs, are part of our American identity, not apart from it.

Audre Lorde wrote about Vermont in “Every Traveler has one Vermont Poem.” She takes us with her down Route 91 during a glorious late summer day. She surrounds us with images of lavender asters, oxeye daisies and intricate shadowed mosses on the bark of trees. And in the last stanza she describes two tanned boys, driving their father’s tractor as they harvest a field. Lorde writes:

One boy smiles as we drive past

the other hollers

nigger

into cropped and fragrant air.

Vermont often handles difference as poorly as other places, just as this Vermont poem contains both beauty and ugliness. Only when we own this truth, and refuse to condone racism and other discrimination, can we get past the failures of American and Vermont history. By acting in recognition of our shared democracy we can shape a different roadway, one that belongs to all of us.

 

Opioids and Chronic Pain: What’s the REAL Epidemic?

By Cara Sachs, CPC, ELI-MP; Cara Sachs Coaching

I have access to opiates. And I’m curious about what it would be like to get high. The two are connected, aren’t they?

Not if you have severe chronic pain, like me.

For people like me, opiates allow us to function. For people like me, they are essential for any quality of life. For people like me, opiates DO NOT give you any kind of a high. They don’t eliminate pain completely, either. All they do is dial it down to a slightly more tolerable level. And for people like me, they are a lifeline that is severely threatened right now.

If you’re thinking “doesn’t taking opiates mean you have an addiction?” the answer is “NO.” Taking opiates continuously means a physical DEPENDENCY, but that’s very different from addiction. Dependency is part of addiction, but addiction is not always part of dependency.

If that’s confusing, my story may help you understand.

For about six years, I took 30 mg of extended release morphine twice a day, prescribed and monitored by my doctor. I definitely had a physical dependency. If I forgot or went too long without my medication, I got sweaty, shaky, and my pain levels would amp up quickly. But I did not have an addiction.

I had the option of a third dose each day, which I almost never used. Someone with an addiction would not have been able to resist that third dose. In fact, if I had an addiction I would not have stayed at the same dose for six years. Addiction means having both a physical and psychological need for a substance to cope with or escape everyday life. Removing access to a drug will not end the addiction, as the person will seek out other substances to cope, both legal and illegal.

As the hysteria over opioids escalated, I was scared I would be suddenly cut off from my medication. So, without any prompting from anyone, I decided to go off the morphine. It was completely my idea and my choice, and I did it completely on my own.

If you’re thinking “well, if she could just go off it then she didn’t really need it,” you’re dead wrong. It wasn’t easy to get off at all. My pain levels skyrocketed, my activities became much more limited, and I was suddenly completely unable to sleep, so several (more expensive) meds were added.

“But you’re fine now without it though, right?”

No, not right. I’m in a lot more pain all the time now. Sleep is very elusive, and usually torture. Lack of sleep increases pain, which then makes sleeping even harder. It’s a vicious cycle. Plus, my illness (Ehlers Danlos Syndrome) causes my ribs, vertebrae, and sacroiliac joint to slip out of place almost every night. Any and all of my joints can dislocate easily during the day too. Fatigue makes my joints even more unstable. If you’ve ever dislocated a joint yourself, or know someone who has, imagine that pain happening in multiple joints twenty-four hours a day, every day, while continuing to do all your regular activities.

Maybe you’re thinking “…but what about all the people that die from prescription drugs?” Well, let’s take a look at that:

The Centers for Disease Control (CDC) has admitted that they’ve grossly inflated (nearly doubled) the number of deaths from prescription drugs. The reason their numbers are so wildly incorrect is that they included heroin (NOT a prescription drug) and illicit fentanyl in those numbers (Anson, 2018). This doesn’t diminish the tragedy of overdose deaths in any way. However, it is PRESCRIPTION opioids that are on the hit list.

“But people get hooked because they get prescribed opiates, right?”

Not quite. Judith Paice, PhD, RN, director of the Cancer Pain Program at Northwestern University, said that 75 people of people who started their addiction with prescription drugs never had a legal prescription. It is incredibly rare for a chronic pain patient to misuse opiates (Chriss, 2017). We don’t get high and we know how precious they are.

If you’re thinking you’re lucky this doesn’t affect you, wrong again. You and your loved ones may not have chronic pain now, but there’s absolutely no guarantee that you never will.

Think about what it would be like to have surgery or severe cancer pain and only be given Tylenol.

Sounds extreme? You’re right, it IS extreme. AND it’s already happening. Oregon Medicaid wants to force all chronic pain patients completely off all opioid pain medications, and other private and government insurers will follow suit (Wargo, 2018).

“But these new rules about opioids were made by experts for good reasons, right? They couldn’t be hurting people!”

Wrong again, on several counts. There are no “rules,” only guidelines that are being misused to pressure and intimidate our doctors. The group of “experts” who set these new guidelines included only mental health professionals, and absolutely no doctors who specialize in pain management (Rodis, 2018).

The idea of “not hurting people” couldn’t be farther from the truth. Frequent use of a neural pathway strengthens it. This means that the longer you have unrelenting and untreated pain, the more likely you will continue to have pain, even after healing. The misguided response to the so-called “opioid epidemic” has spawned another epidemic that is rapidly escalating. It’s an epidemic of desperation that is killing people with chronic pain. People on established and effective pain management plans are suddenly being refused the one thing that allows them to function. Left in agonizing pain with no hope of reprieve, many take desperate measures. For every chronic pain patient that successfully commits suicide, there are likely at least a thousand more considering it — it’s a common topic of discussion in chronic pain groups now. That desperation drives some to search for alternatives, and they end up dying from street drugs. Jon Rodis, a national health care advocate and chronic pain patient, has seen the desperation epidemic and subsequent deaths escalate rapidly. He told me of one doctor who lost four patients to it (Rodis, 2018). All of these deaths were completely preventable.

One last observation: Addicts use opiates to escape from the world, to avoid living. Chronic pain patients use opiates to be able to engage with the world. They are not the right treatment for everyone, but for many of us, they enable us to live productive lives, to work, to love, and to participate. Simply put, they allow us one of the most basic rights of every American guaranteed in our Constitution — to live. We will never stop fighting for that, and we invite you to join us. Our lives depend on it…and yours may too.

References

Anson, P. (2018, March 21). CDC Admits Rx Opioid Deaths ‘Significantly Inflated’. Retrieved from Pain News Network: https://www.painnewsnetwork.org/stories/2018/3/21/cdc-admits-rx-opioid-deaths-significantly-inflated

Chriss, R. (2017, July 25). The Myth of the Opioid Addicted Chronic Pain Patient. Retrieved from Pain News Network: https://www.painnewsnetwork.org/stories/2017/7/25/the-myth-of-the-opioid-addicted-chronic-pain-patient

Rodis, J. (2018, August 15). (C. Sachs, Interviewer)

Wargo, H. (2018, August 16). Opinion: The Battle Against Opioids Could Mean Misery for Patients in Pain. Retrieved from The Western Journal: https://www.westernjournal.com/opinion-battle-opioids-mean-misery-patients-pain/